For those who care for someone with Parkinson's disease
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By Dreni On 2010.02.20 11:22
I am new to this site and looked it up because I need some moral support as a caregiver. I am an only daughter and the only caregiver of my mother who lives with me. She is a retired nurse and was the only caregiver of my father who died with Parkinson's disease twelve years ago. Ironically she developed Parkinson's three years after he passed. I took her out of her home when I knew it was too dangerous for her to care for herself. At this point she needs a transport wheel chair for her doctor appointments and assistance from her bed to a chair. I have a motorized chair that helps one stand up, however once up, her balance is so bad that i must bare her weight against mine. She is a normal weight but even a normal weight tugging against your arms day in and day out can be wearing. Taking care of her is a decision I made however I sometimes say to myself what was she doing at my age. She was traveling the world with her husband. I am glad she had that at that time. I just wonder am I giving up too much of myself. I am in remission from cancer. She was unaware I even went through it. I have two children and two granchildren but one is four hours away and the other is an hour away. My siblings don't live close by either. I have friends who have husbands and their own life that they are into. So I do feel kinda alone in this. Communicating with others who are dealing with this disease may provide me with some support.

By MJ-Camano On 2010.02.20 13:11
I would encourage you to get some assistance with the care and not loose yourself in the process of caring for your mother. I have been to several caregiver classes and talked to counselers, etc and they all encourage to try to keep your life in balance; basically do something for yourself every day!! This is a hard balance to find, and we still fight with the notion that we need to be here full-time for our loved one.

I have been able to obtain some respite care, I would encourage you to check into this thru your local senior center, state senior services, etc. It is hard to ask for the help, but it is so necessary for us to do this.

I recently read a book "Still Alice" about a 50 year old professor that has early onset Alzeimers, it is written from Alice's view; so there are several insights to the dementia and how it is for Alice. Several friends and relatives have also read the book, but it did not register to them that in the end the husband kept choose to keep on with his life rather than being there to care for her full-time. And I think it is important for us to all know that this is okay.

Reading this Forum has really helped me tremendously, knowing there are others that feel the same way as I, and so many suggestions for the many problems.

By Dreni On 2010.02.20 22:34
Thank you for your words of encouragement. It is hard to ask for help especially when those close to you don't offer help. But just hearing someone say it's okay to do something for yourself helps soften the guilty feelings that you are not doing all you can for your loved one. I think my concern with respite is that she will think I am putting her away. I know it will probably be okay once I take that first step and she is able to see it is temporary but it has been hard for me to take that first step. Thanks again

By LOHENGR1N On 2010.02.21 00:25
Dreni, Welcome to the forum, there are many caring people to help you here. Keep posting anything you have problems with or just to vent it's all good. If you go to the top of this page and click home, then click resources at top of that page you'll find a list that might be helpful in find programs to give you a break. Esp. scroll down to senior information and click on this has a simple form to fill out (guesstimate answers if you need it works for any state and will give information on programs offices to apply at closest to your home etc.) Take care, best of luck and hang in there!

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